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Why I Walk – Jowanda Summers

My name is Jowanda Summers and I Walk for my family and Great Grandma Flora.

When I was only four, my father died and a few years later, my mom remarried. I remember my brother and I feeling overwhelmed by the acquisition of a new family – new grandparents, uncles, aunts, and cousins.

The very first large family gathering was a birthday party for Great Grandma Flora, and I remember my first impression of her was that she definitely looked like a Grandma – kind eyes and neatly-styled white hair.

A few months after that party, we found ourselves visiting her in the long term care facility that she had been moved to.

When we arrived, I remember overhearing the adults whispering things like, “she can’t remember how to count,” and “she was wandering lost in the street,” and “she forgot how to eat,” and worst of all, “she doesn’t know any of her children.”

My brother and I couldn’t imagine how someone could forget how to count, when to eat, or forgetting their own children. We ‘knew’ our Mom could never forget us.

When my brother and I finally entered the room, we saw a frail woman in bed with wild eyes and long hair which was sticking out in all directions. Her mouth moved constantly but she wasn’t speaking. Her eyes met mine and she began repeating the sound “bababa” over and over. To my dismay, she reached down from the bed and grabbed at me. I cringed away and grabbed Mom’s leg. My brother cried and was taken outside.

How could this possibly be the same woman we had met just a short time earlier?

My Mom kneeled down and told me that “bababa” was Grandma Flora’s way of saying baby and that she wanted to hold my hand. She reassured me and said that she would hold my other hand if I would let Grandma Flora hold my hand.

I tentatively held up my hand toward the bed and Grandma Flora reached out and took it. Her hand was cold and thin and she had a tight grip. She rubbed the back of my hand repeatedly with her other hand and she continued to babble. It seemed as if she held my hand forever and I grew restless. My Mom replaced my hand with hers and Grandma Flora screeched her displeasure as she was happy holding the hand of a child but not that of an adult.

Tears welled up in my eyes and I begged to leave and as we left, Grandma Flora continued to reach out toward me saying “bababa” and I felt the weight of guilt on my heart.

When we got home, Mom asked if I would like to give Grandma Flora the large doll that I had been given for my birthday the year before. She said that she thought that Grandma Flora might like to hold the doll and that it might help her to keep calm. I agreed, eager to do something to help.

The following Sunday, Mom and I went for a visit, just the two of us, and I brought that doll.

The doll had long blond hair and large blue eyes. It was a child doll not an infant doll, but Mom wrapped her in a soft pink baby blanket and explained to me that the doll was about the size of an infant and that Grandma Flora could hold her and feel like she was holding a real baby.

As we entered the room, Grandma Flora began babbling “bababa” loudly. I took the doll to her and she cradled it in her arms, stroking the doll’s hair and he got quiet as she rocked the doll in her arms. I remember my heart filing with joy as I watched her with that doll.

Over the next 10 years, we visited Grandma Flora in the nursing home often.

The doll remained with her and we periodically replaced its clothing and blanket. Grandma Flora was never capable of expressing a name for the doll and we simply called her Baby.

At the age of 17, I accepted a job as a nursing assistant in that facility and that is where I first saw the diagnosis of Alzheimer’s disease in relation to my Great Grandmother’s name. Grandma Flora still lived in the same room and her condition had remained much the same.

During this time, I truly began to understand the devastating effects of dementia.

I learned to feed and dress patients who could no longer care for themselves and I often stayed late to feed Grandma Flora and brush her hair.

She stroked my hand at times and screeched at me at others.

Sometimes holding Baby helped and sometimes nothing did.

I answered to many names that were not mine and I played the part of loved ones long gone.

I learned that simple actions and gestures can sometimes buy a few moments of peace, but in time dementia always wins.

So I Walk for Great Grandma Flora.

I Walk for the 5 million people with Alzheimer’s disease.

I Walk for the 15.5 million personal caregivers.

I Walk for a cure to a disease that currently has no survivors.

If nothing is done to stem the tide, soon there will be 15 million people with the disease and 45 million caregivers.

The Walks to End Alzheimer’s may be over, but there is still time to donate.

Get involved and make a difference for the millions of Americans with Alzheimer’s disease or other dementias!